A Chef, His Brigade and the Indomitable Next Course

For four decades, Kerry Simon has been one of the culinary world’s most dashing—and most beloved—kitchen warriors. Now a rare disease has him fighting for his life.

February 12, 2014 at 9:59amBy Lonn M. Friend

Kerry Simon, photographed at home with his dog, Cosmo, on January 15. | Photo by Anthony Mair

It’s approaching 1 p.m., and the boss is running late. The Sunday Pajama Brunch at Simon inside Palms Place started three hours ago. The sixth-floor, poolside restaurant is crowded and downright kinetic. “Where’s Chef?” asks a patron piling a dozen shrimp off the bountiful buffet onto his plate. “He’ll be here,” says an attractive server named Christian, her Paul Frank-designed pajama bottoms summoning the gaze of several bloodshot males. “Chef never misses Sunday brunch!” chirps another comely server, crossing the room with a tray of tequila shooters. But on this particular Sunday, it isn’t important whether Chef Kerry Simon is on time. Given the circumstances, it’s a miracle that he’s coming at all.

Just before 2 p.m., the celebrated kitchen magician and global restaurant entrepreneur—knighted by Rolling Stone two decades ago as the “Rock ’n’ Roll Chef”—rolls into the room in an electric wheelchair and, with the help of his devoted assistant, Jason Strange, lifts himself into a booth. Within seconds, the procession begins, like the receiving line at some very hip wedding: “I went to a wild house party last night in the northwest,” smiles the first familiar face. “Guess you can tell I’m still in the same clothes.” Chenzo Dobarro from John Varvatos—a stylish fellow who keeps the chef looking sharp when he’s not in his whites—joins the main table and hugs his friend. “How you doing, man?”

Chef Simon is asked that loaded question dozens of times over the next three hours. With modest variation, the response is always the same: “Hanging in there.”

The brunch is a strange hybrid: part family gathering, part induction into some as-yet-unnamed hall of fame. Since the mid-1980s, when a young chef with personal flair and a gift for making just about everything taste better landed at New York’s Edwardian Room, Simon has been living proof of the old saw that the way to a man (or woman’s) heart is through the stomach—gathering an extraordinary array of friends, many of them famous, most of them unusually devoted. When he brought his already-global brand to Las Vegas in 1998, his followers didn’t miss a beat—when you’ve got a lot of friends, it’s nice to live in a town with an international airport and more than 100,000 hotel rooms. Today, as old and new friends approach, he enjoys the small talk and happily accepts embraces from women. “There’s a party of 15 ladies in the private room,” says sous chef Matt Andrews. “Really?” Simon responds. “Make sure you take good care of them. But first, can you make me some egg-white huevos rancheros, not too spicy? You know how I like ’em. And some fruit.”

After the greetings subside, Simon feeds voice commands into his iPhone that initiate texts and reminders for his calendar. He can’t tap the keypad the way he used to. He can’t do anything the way he used to. “I’m getting picked up at 5 p.m. for the Max Jacobson benefit dinner,” he says. Jacobson, a veteran restaurant critic (and a Vegas Seven contributing editor), was struck by a car while crossing a street on December 23; his condition is improving but remains critical. Marquee chefs from around the Valley are putting on a dinner at the Rx Broiler Room in Mandalay Bay to help his family raise money for medical expenses. “Have to be there for Max,” says Simon. “He was always there when I opened a new restaurant. So tragic, what happened to him. Blindsided. Guess I can relate, huh?”

*****

The clinical term for the anatomical truck that plowed into Kerry Simon is MSA—multiple system atrophy—a rare, progressive, neurodegenerative condition that presents itself with symptoms similar to those of Parkinson’s disease, only far more aggressive and debilitating. The disease generally affects men and women over 50; recent figures put its prevalence at about five cases out of 100,000 people. Life expectancy with MSA averages 10 years; nerve cells die off over time, and regions in the brain stop working. Nobody knows the cause of MSA, and there is no cure.

“Three or four years ago, I started to feel like something was wrong,” says Simon. “I felt a pain in my groin after a run. Back then I was jogging three miles a day. Then my legs started to get affected. I was losing my stamina. First doctor I went to treated me for a swollen prostate. This went on for months. Then I was diagnosed with transverse myelitis. I was sent to the Cleveland Clinic. It was getting difficult to walk just a few steps; I was losing my balance. Another doctor in L.A. put me through a bunch of tests and thought it was Parkinson’s, but it wasn’t until I got to the Mayo Clinic, just around four months ago, that I really understood that it was almost certainly MSA. Science has no way of knowing for sure—that’s the crazy thing. But it’s moving very fast now.”

*****

Until about 14 months ago, Simon, now 58, had the countenance, stride and shoulder-length, jet-black locks of a considerably younger man. He’s still got the warm, disarming baby-face gaze, but he’s visibly aged, weary from the battle. The energized mobility he once enjoyed has been severely compromised. In two months, he’s transitioned from cane to walker to motorized chair. Simon even cut his hair, which wasn’t easy, either. (“I thought it was time for a change,” he says. “A girl I know came over, and I said, ‘Cut it off!’ She started chopping away—in the middle of it, I said, ‘Is it too late to turn back?’”)

Simon is sitting at a 20-foot picnic table in his Grand Canyon Estates home in the southwest Valley. The table was made from the original doors of Simon Kitchen & Bar at the Hard Rock Hotel. In one hand he holds his iPhone; in the other, the controls to his 20,000-song digital music library. He has been welcoming guests all day as songs from his personal vault fill the room. Visitors bring homemade offerings to keep his belly filled, his heart engaged and his mind distracted from the devil running amok in his weakening body.

Portraits of the chef as a young man. Simon in his high school days.

Kurt Lambeth arrives, his arms piled high with the fixings for homemade lamb tacos in tomatillo sauce. Simon is quite fond of his Cedar City-born attorney; Lambeth has impressive skills in the kitchen, not to mention an encyclopedic knowledge of rock.

“That turkey soup the other day was really good, Kurt,” says the chef.

“Hey, man, when you’re cooking for the master, you gotta up your game,” fires back the barrister in the Keith Richards tee. “Wait until you taste this lamb—comes straight off my family’s land in Utah.”

Simon is hungry. He may have lost a good portion of his motor skills, but he hasn’t lost his appetite. Food has always been a social experience for Kerry, a sharing of bounty—the tribal dance of tongue, taste and tunes. His website proclaims, “Ecstasy of Gastronomy,” which could have been the title of an early Blue Öyster Cult album.

The Simon sanctuary is a pop-culture museum; its treasures reflect the triumphs of a remarkable career: There’s the framed poster proclaiming his Iron Chef burger victory over Cat Cora; the purple ceramic bust carved for him by Colorado artist Dave Parvin; the haunting portrait by storied surrealist David LaChapelle. Every wall is covered with priceless inscribed memorabilia meticulously organized and hung by his personal curator and longtime friend, famed photographer Lynn Goldsmith. The collection rivals the wares of the Hard Rock itself: the Rolling Stones, David Bowie, the Beatles, Jim Morrison, The Who, Elvis Costello, Led Zeppelin, Van Halen, Stevie Ray Vaughn, Blondie—they’re all here in iconic shots. Vintage guitars stand silently on the floor—a hint that the Rock ’n’ Roll Chef really could rock. (“I haven’t been able to play for a couple of years,” he laments.) Staring down at his musical control box, he cues up “Sweet Burgundy” from another fallen rock hero, ax wizard Tommy Bolin. Simon closes his eyes and meditates on the verse: Pour me another glass of sweet burgundy, maybe that will help ease my pain.

There are stacks of books everywhere. On the picnic table rests Pema Chödrön’s The Places That Scare You,The Mayo Clinic Diet, 90 Minutes in Heaven: A True Story of Death and Life, Eckhart Tolle’s Living a Life of Inner Peace, Dewdrops on a Lotus Leaf: Zen Poems of Ryokan and various other soul-expanding volumes. “I listen to music a lot, but I’m also starting to appreciate silence,” says Simon, thumbing through the new issue of National Geographic bearing the cover line, “The New Science of the Brain.” “Meditation, going inside myself to find a little peace or an explanation for something that doesn’t make any sense to me at all. I’ve had all sorts of healers in the past couple of years—some good, some crazy. But you get to a point where you have to make choices, perhaps suspect, because you just want to stay alive.”

*****

Linda and Jason Strange are the attentive, adoring mother/son caretaking team on 24/7 duty in the Simon home. She met Simon in a Starbucks 14 years ago, had no clue who he was and has worked for him ever since. She’s a laid-back hippie who ends every encounter with “Have a grateful day” and prays every moment for her boss’ recovery. Jason is colorful, confident and completely devoted to the man he refers to as “Mr. Simon.”

“Mr. Simon is a badass,” Jason says. “The outreach has been huge, so many friends calling every day. He’s got love in spades because he’s given so much to people and to this city. But it’s rough, man. His breathing is labored, especially at night. He needs a CPAP [continuous positive airway pressure] device to kick-start his lungs. He also blows into this thing—the Voldyne 5000—five or six times a day. We’re training him for the stem-cell trial like an athlete getting ready for the Olympics. The man is poise and grace in the face of adversity, and I’m honored to be by his side every day.”

*****

Kerry Simon was born on June 17, 1955, in the Philadelphia neighborhood of Germantown. He spent his early years going to see ’60s bands like Canned Heat in Atlantic City before he was old enough to shave, no less manage a paring knife. In 1970, after his mother died, his father moved him and his two brothers to Evanston, Illinois, just outside Chicago, which he has long and fondly referred to as his hometown.

After graduating from the Culinary Institute of America in Hyde Park, New York, Simon worked in Manhattan with culinary legends Jean-Jacques Rachou of La Côte Basque and André Soltner of Lutece. Then he worked at the historic Lafayette Restaurant in the Drake Hotel. There he met his mentor, friend and business partner, Jean-Georges Vongerichten, with whom his career would be intertwined for decades. The team was formidable, and The New York Times awarded the Lafayette four stars.

Simon with Bianca Jagger at the Edwardian Room.

In 1988, Ivana Trump appointed Simon executive chef of the Plaza Hotel’s Edwardian Room. This brought him increasingly into contact with celebrities—and he began to evolve into a celebrity in his own right.He cooked up meals for the likes of Matt Dillon, Diane Keaton and Debbie Harry. It was in Simon’s Edwardian kitchen that David Bowie asked Iman to marry him. InNew York City, word of mouth travels faster than a cab down Second Avenue at 4 a.m. Star sightings from the chef’s private table soon leaked into the local press as paparazzi perched their lenses on Central Park South primed for pix of the rock populi exiting the Edwardian after dinner. Even the hallowed pages of Rolling Stone couldn’t help but devote ink to the hearty happenings.

From this formidable base in Eloise’s mythical palace, Simon imagined expansion of his culinary dream to other cities, states and countries, so while keeping his main residence in New York City, he made frequent trips wherever opportunity was knocking. In the mid-1990s, Simon opened Blue Star at Miami’s Raleigh Hotel, where he developed what would become his signature approach to American comfort food. Blue Star’s success led to the Starfish, a seafood restaurant in the same high-end hostel. The love affair with southern Florida was on. Simon next opened Max’s South Beach with Dennis Max. Then as executive chef of Kenneth Jaworski’s restaurant, Mercury, Simon took his quarter-century’s worth of culinary expertise and training to its highest level yet.

In 1996, Simon returned to New Yorkto work more closely with Vongerichten, who was making huge moves in the shifting world of exotic dining. They teamed up at Mercer Kitchen; a culinary empire was growing. But Simon still hadn’t set foot in Sin City.

*****

Simon with Jean-Georges Vongerichten at Lafayette in 1986.

That would change on a chilly night in the fall of 1996, when Simon wound up in a room with two major stars in the Las Vegas hotel-dining firmament: Steve Wynn and Elizabeth Blau. They were visiting New York City to dine at the newly opened Vong, Simon and Vongerichten’s Vietnamese-French fusion venture. Wynn was about to add a new jewel to his Las Vegas crown: It was to be called Bellagio, and it needed great restaurants. So Simon and Vongerichten pitched Prime, a steakhouse with a French flair—and Wynn said yes. The restaurant cost $6 million to open in 1998 and grossed $12 million the first year. The table was set for Chef Kerry Simon to rock the desert.

*****

With the help of Blau, Simon Kitchen & Bar at the Hard Rock opened in October 2002 and was named one of the Top New Restaurants by Esquire. Simon LA at the Sofitel Hotel followed in 2006. Back in Las Vegas, Simon’s most provocative fusion adventure to date was taking shape. “The CatHouse at Luxor was a blast,” smiles Simon with a slightly wicked glint. “The servers wore lingerie, we had vintage porn-inspired paintings on the walls, a real Bettie Page pinup vibe. Adult film stars frequently came in, and it got kinda wild some nights. I had too many business partners and some problems with the building’s structure. It was fun while it lasted.”

Restaurants followed in downtown Los Angeles, on the Jersey Shore and in the Dominican Republic. In 2010, Simon became a pioneer of the gourmet burger craze with KGB (Kerry’s Gourmet Burgers) at Harrah’s. He seemed to be on the swell of every wave: When daylife rolled into town, Simon provided dishes at Sapphire Pool and Day Club. And most recently, despite his condition, Simon brought Pork & Beans to Downtown’s Container Park.

*****

If anyone is positioned to get the nation to rally behind the fight against MSA, it’s Kerry Simon. And if any city was poised to be the national vortex for clinical research and treatment for MSA, it’s Las Vegas. Three times a week, Simon goes to therapy—a regime of intense mental and physical exercise—at Downtown’s gleaming Frank Gehry fever dream, the Cleveland Clinic Lou Ruvo Center for Brain Health, home to world-class Parkinson’s specialists such as Ryan Walsh, who just happens to be Simon’s doctor.

Walsh, who envisions a clinical home for the illness at the Ruvo Center, says awareness is growing geometrically, in part because of the notoriety and visibility of Chef Simon. “Kerry can tell you that a lot of different parts of your life are affected by this disease,” Walsh says. “Not just problems with movement, but there are problems with a number of other systems of the body. The two issues are: What causes MSA, and how do we better diagnose it? Hopefully we’ll be able to leverage our growth as a center, the research that builds around it from a diagnostic standpoint, and connect that with others in the field more broadly to actually build a real pipeline around us.”

In March, Simon will travel to the Mayo Clinic to participate in a highly experimental stem-cell trial. The hope is that the injection of stem cells derived from Simon himself will help him combat the disease. Walsh stresses, however, that the procedure is still in a very early research phase.

So the frontiers of science await, in all their mystery and distant promise. In the meantime, Simon keeps doing his part, regularly going to Las Vegas’ FitLab to stay strong and master the physical challenges of MSA. At one recent session, he walked across the room on his own power and started pounding a punching bag.

*****

“I always knew I could cook, ever since that first chicken cacciatore I made at home,” the chef says. That cacciatore—the Dish That Started It All—came after a long day slinging pies at Little Caesars Pizza in Evanston, where Simon worked alongside a wry future comedian named Bill Murray. “I tried to talk him into being a chef, but I think he made the right career move.” (The two remain friends to this day; Simon recently told Murray about his impending stem-cell trial at the Mayo Clinic. “He said to tell him what days I’d be there, and he’d make a celebrity appearance,” Simon says. “Make sure I get good treatment.”)

Having proven that ample inspiration can come from Little Caesars, Simon built his success around his openness to a wide swath of influences—some from across the globe, some from the street corner. “It could be simply tasting something that inspires you to go home and tweak it a bit. I guess that’s where my signature dish came from—meatloaf. It was really my mom’s recipe. Putting a dish like meatloaf on the menu was a gutsy move back when I introduced it at the Raleigh Hotel in Miami. A local food critic wrote after we opened that it was the best meatloaf he’d ever eaten. The recipe has evolved over the years to make it more palatable to customers—like adding pork to the beef, bacon on top.”

Simon’s mother died when he was 15. “My mom was a wild alcoholic. She went into rehab, got out on a weekend pass, fell asleep drunk one night, dropped a cigarette in her bed, the room caught fire and she was overcome by smoke inhalation. I was living with my dad at the time in Chicago. He died in ’92 from chronic leukemia. Went in for a checkup and never came out. MSA, what I’ve got, it’s nowhere in my gene pool. Not anywhere in my family.”

Simon doesn’t like to dwell on his legacy, his former youthful image or managing his many restaurant properties. His brother Scott is taking care of Chuck’s: A Kerry Simon Kitchen at the Hard Rock on Chicago’s Michigan Avenue. The December opening was quite a homecoming. “It was awesome,” he beams. “Friends I grew up with came out. The media was nuts. Everyone was so kind. There’s nothing like the opening of a new place.”

When he gets too sick to think about the next dining destination, that will signal the time to ask for the check. Until then, Kerry Simon keeps the flame burning. “I’m really excited about Carson Kitchen,” says Simon. “Design is done, build-out is happening, I’m working on the menu right now.” The restaurant, a Downtown collaboration with Tony Hsieh, is set to launch early this spring. “We’re supposed to open in March, probably while I’m on a table at the Mayo Clinic. I can see it now: ‘Hey, are we done with the MRIs? I’ve got a restaurant to open.’”

Simon is once again holding court at his home. An old INXS tune, “Devil Inside,” bellows from the ceiling speakers. The voice belongs to Simon’s friend Michael Hutchence, who committed suicide in 1997. Simon talks about the devil he’s busy battling.

“The pain comes and goes,” he says. “I’ve cut back on the meds. The Mayo Clinic wants me to have as clean and drug-free a system as possible before the stem-cell trial. They’re going to inject stem cells into my spine—like a spinal tap, twice. Each procedure takes three days. They do a bunch of MRIs and watch the growth of the cells. There’s no real answer to any of this, but what am I gonna do? Trying to go with the flow, right? Am I afraid to die? Not really. I’m afraid to live. Like this. When you start seeing life as death, it’s a hard thing to embrace. This is no fun. And I used to know something about fun.”

Simon with Elizabeth Blau at Simon Kitchen & Bar in 2002.

That last line is a woeful understatement. Was it fun accompanying Goldsmith on a shoot at the home of gonzo journalist Hunter S. Thompson? (“We stayed up all night talking about wine, sports, food and politics. It was awesome.”) Was it fun assisting another famed photographer, Mark Seliger, at a Jay-Z photo shoot in Bangkok? Or lugging his pal Mark’s lights and umbrellas to Lenny Kravitz’s ranch in Brazil for a two-day feast and photo session? Was it fun hosting a backstage dinner party for Led Zeppelin at their 2007 reunion? (“Check out that incredible Ross Halfin signed photo—one out of a hundred—of the boys that night,” says Simon. “Jimmy Page looks like the super rock star, doesn’t he?”) Was it fun throwing Debbie Harry’s private birthday party in the Plaza Hotel kitchen when he was executive chef of the star-studded Edwardian Room? (“She came out of the clubroom dressed in lingerie,” he smiles.) Was it fun nibbling pasta at Dave’s Italian Kitchen in Evanston and having conversations with his dough-kneading mentor about having his own restaurant some day? Was it fun throwing out the first pitch at a Dodgers game with his Palms Place partner, George Maloof?

*****

Kerry Simon has traveled the world, but his rock ’n’ roll heart is in Las Vegas. In January, he was honored at the Venetian with a Best of the Silver State Award. It was just a day after the news broke publicly about his condition, and the audience rose to its feet in appreciation. Emcee Robin Leach introduced Emeril Lagasse. “God bless, Kerry Simon,” Lagassesaid. The room took a collective breath as the evening’s honoree motored across the stage. Holding back tears and flanked by the city’s most celebrated restaurateurs, Chef Simon caressed the mic, his right hand quivering, partly from nerves, partly from the MSA. “Wow,” he began. “I’ve been here since 1997. I love this city. Elizabeth Blau and Steve Wynn got me out here. Been tons of fun. Haven’t been the same since. I’m not gonna stop. Such a great city. So much food has come here since I arrived. It’s pretty amazing. The whole thing is amazing. This is amazing. Thank you for coming.”

Photo by Anthony Mair

Amazing also describes what will take place on February 27 at the Keep Memory Alive Event Center at the Ruvo Center, when Simon’s friends from across the food and rock spectrum gather for a culinary and musical spectacular to raise awareness, spirits and, of course, money to help find the cause of (and, ultimately, a cure for) MSA. Alice Cooper, Sammy Hagar, Slash, Vince Neil and pizza-spinning partner Bill Murray are on the bill of fare.

“If we get super ambitious with our goals after this first event, I know we can raise $10 million,” Blau says. “And that’s what Dr. Walsh needs to build that dedicated neuroimaging center in Kerry Simon’s name.”

The campaign’s logo and social media message are in your face—just like the music Simon has loved his entire life: Simon Says, #FMSA. Face it, fuck it, fight it! Gloves and apron off. The fight is on, and this beloved chef’s loyal warriors are poised for battle.